A mother's plea to save her three-year-old daughter
By Ash Kent|
When three-year-old Eleanor isn't being a proud-as-punch older sister to her baby brother, she's painting, drawing, building things and collecting shells along the beach.
Eleanor's mum, Jacqui, describes the little pocket-rocket as "a huge personality" with typical toddler "naughty moments."
However, this little girl has been through more in the past 18 months than most adults could ever imagine, let alone endure.
In January 2018, at just 18 months old, Eleanor was diagnosed with Neuroblastoma. This rare childhood cancer affects around 60 children under the age of five in Australia each year.
The disease starts in the central nervous system, then uses bone marrow to travel rapidly around the patient's body. For Eleanor, it began as a tumour in her right kidney in the adrenal gland.
Over the next 18 months, little Eleanor fought off the cancer with chemotherapy, surgery and radiology. Her family uprooted their life in Hobart and moving to Melbourne for her treatment.
In April, the family finally returned home after scans showed Eleanor had no more evidence of the disease.
Jacqui and Rob were elated to have their little girl back and return home with their friends and family. Life began to shift back to normal กช until their oncologist sat them down following a routine scan at the end of July, only days after Eleanor's third birthday. Eleanor had relapsed, and a new tumour had been found in her right frontal lobe on her brain.
"We were absolutely devastated for our little girl," Jacqui tells 9honey.
"The problem with the relapse is there's no cure for it. It's about stabilising the disease, and hoping to find something that may, if you're lucky, cure your child."
The family were devastated all over again, and picked everything up to head back to Melbourne to consider their options. The only option they're sure of is that they're not going to give up.
Eleanor had surgery on the tumour, before her parents sat down with the oncology team and began to discuss the course of action.
"We believe we can cure Eleanor, and we don't want to go into palliative care. That's not an option for us, we will fight this until we can't fight it anymore," Jacqui says defiantly.
"So then we thought about looking at different hospitals around the world that specialise in central nervous system relapse, and we found one. It's a big Neuroblastoma research hospital in New York.
"I was lucky enough to have a phone conference with the leading investigator of the 8H9 trial, and she said if we can keep Eleanor's disease stable with radiotherapy that we are currently doing in Melbourne and then chemotherapy afterwards, then she should be a good candidate for that trial. But it costs a lot of money."
It costs $2.2 million, to be exact กช not the kind of money a small family from Hobart had in their back pocket. But after hearing how the trial works and crunching the stats, Jacqui and Rob knew they had no other choice.
"It works by injecting an antibody straight into the child's nervous system through a port, and that will attack and kill any remaining cancer. The trial is about whether it will work for life," Jacqui explains.
"Statistics say that 50 per cent of children who relapse in the central nervous system will survive with this treatment. If you don't use this antibody and you only use chemotherapy and radiotherapy, her survival is at about 10 per cent."
The family has begun raising money for Eleanor's lifesaving treatment. After shopping around, they've also found a hospital in the States that offers it for only $300,000, a fraction of the other quoted price.
"We have a huge support network here [Melbourne] and in Tasmania where we are from, everyone we know has gotten behind us," Jacqui says.
"But these next eight weeks in Melbourne are pivotal for Eleanor to keep her disease stable, so if that does happen she would meet eligibility and we would basically be expected to get on the plane the next week."
As for the little girl fighting the disease, her mum says she is in relatively high spirits despite the heavy radiotherapy, and actually enjoys her daily trips to the hospital.
"She'll tell you she's bumped her head because she has stitches [from the brain surgery]," Jacqui laughs.
"She's good within herself, and she has her naughty moments as any toddler does. She's still happily playing but she's certainly slowed down from her treatment and we can't get her to eat at the moment."
For now the family is in high spirits and can't wait to get Eleanor across the world for her life-saving treatment.
"We've been really, really low. But all of this support has been mind-blowing," Jacqui adds.
"We do believe we can get Eleanor through this."
